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Pip stopped but getting worse

cfd42cfd42 Member Posts: 7 Listener
edited November 2017 in PIP, DLA and AA
Hi I've recently had my pip stopped. I suffered a massive csf leak 3 years ago and my gp misdiagnosed it and I went 18 days without fluid around my brain. My neurologist doesn't help my situation because he doesn't have a clue. Over the last year my symptoms have got worse but yet they stop my pip. Any advice would be appreciated. Thanks


  • mikehughescqmikehughescq Member Posts: 6,575 Disability Gamechanger

    You have one month to challenge your PIP decision via a mandatory reconsideration. There is nothing to be lost from doing this. Some people recommend doing a new claim as well but the benefits of doing this vary from case to case and it will time-limit any award from your first claim to the day before your new claim and cause problems with inconsistent awards and multiple claims if the new claim fails as well. Best to start with the MR.

    Also worth getting a copy of your report and seeing whether there is anything worth a complaint. There usually is.

  • mossycowmossycow Member Posts: 495 Pioneering
    The scope helpline are great at offering advice and support for appealing.

    Really sorry to hear, must be so frustrating. Go for it, and best of luck. 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @cfd42, it sounds like you've been through a really tough time and I'm sorry that you're having to fight to claim PIP. Have you begun the appeals process? Scope have some great advice on appealing DWP decisions that you may find useful.
  • kevin888kevin888 Member Posts: 53 Courageous
    Yes fight the DWP  all the way to Tribunal, they purposly try to put us off going though the process but do it. CAB are a good help  look at their web site  and on here. Takes a long time but will be OK at the end, have my Tribunal 2 weeks time after 26 weeks wait
  • cfd42cfd42 Member Posts: 7 Listener
    edited November 2017
    Omg @kevin888. I'm not going down without a fight. **** really that you have to when your fighting everyday to try and keep well. Today I've been to citizens advice then mandatory reconsideration is ready to go. Thanks everyone for all the advice. Good to know I'm not alone. [expletive language removed by moderator]
  • cfd42cfd42 Member Posts: 7 Listener
    Had my mandatory reconsideration refused. They are still sticking with original decision.  It's not helping my situation that my neurologist is useless. Nobody seems to know how to help my symptoms which doesn't help my fight with pip. How can I convince the tribunal when I feel I can't even get my neurologist to listen. I'm in this mess because my gp screwed up and misdiagnosed me and left me for 18 days without any fluid around my brain. I'm so frustrated
  • mikehughescqmikehughescq Member Posts: 6,575 Disability Gamechanger
    Whether or not your symptoms can be fought is actually really helpful for PIP. If symptoms are not treatable that points tonwards an ongoing award.  You need to forget about your issues with your neuro for the purposes of PIP and focus on the specific points scoring activities which are a consequence of your symptoms.
  • cfd42cfd42 Member Posts: 7 Listener
    Thanks for your advice @mikehughescq. I understand most of it. It just discussed me that people with disabilities have to go through this stress
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger

    Tribunals are impartial and only interested in what you can and can't do.  It is not your condition that get you PIP points but how your condition affects you, i.e. the disabilities it causes.

    Disability Rights (DR) site has a good guide to PIP appeals.  Below is what I posted the other day about PIP points and aids - which might be of some help.

    "This is just by way of info about why people are awarded PIP points, which might help those applying for PIP, asking for mandatory reconsideration and appealing to a tribunal.

    To qualify for points, your disabilities only have to affect you seriously enough for more than 50% of the time, i.e. at least four days a week.

    After assessment I was awarded 11 points for daily living - all of those because I had difficulty undertaking/completing tasks even using aids.  2 points each for bathing, dressing, using the toilet, preparing food, taking nutrition and 1 point for taking medication.  In other words, you should get points for having difficulty doing things even with the help of aids.

    Tribunal gave me 2 extra points for food prep because for more than 50% of the time I would need someone to help me.

    Disability Rights (DR) site has a good guide to all aspects of PIP, including the list of descriptors, and a draft diary which you can adapt.  I recommend submission of a 7-day diary with your PIP application.

    For getting around mobility the criteria are:

    Unable to walk before needing to stop and rest:

    Up to 20m aided or unaided  12 points

    20m-50m aided   10 points

    20m-50m unaided   8 points

    You are allowed to walk farther in each category and still qualify if you are struggling because of pain, stiffness, instability or fatigue.

    Some people have reported losing getting around points because they said, for example, they couldn't walk more than 50m without aids but aids allowed them to walk more than 50m.  Remember that you won't get qualifying points if you can walk more than 20m or 50m as the case may be, regardless of aids - unless the reliability criteria of pain, stiffness, instability or fatigue apply.

    Assessors and tribunals probably will ask for how long, not how far, you an walk.  Always say it takes you X time to walk Y meters.  Just stating for how long is open to very wide interpretation."

  • mikehughescqmikehughescq Member Posts: 6,575 Disability Gamechanger
    The statement above re: the 50% rule is incorrect and is being confused with the rules for DLA. 

    The correct position is much more nuanced and complex and has nothing to do with a week at all. It is nicely summarised by CPAG at http://www.cpag.org.uk/content/ask-cpag-online-have-frequency-rules-been-properly-applied
  • cfd42cfd42 Member Posts: 7 Listener
    Thanks a lot @Matilda and @mikehughescq. I really appreciate all your advised and I've also been advised that if I'm not happy with my neurologist I've to demand a second opinion. I'm done being nice it gets you no where
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